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What would you do?

Karag

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Karag Apprentice
Karag
Posted

Hi all and tia for your help!   I took our 5yr DD in for her kindergarten check in May.  I had two seemingly random questions for the Dr. 1) is her tummy bloated or is it just me and 2) she wakes in the night with severe pain in her legs.  He agreed her tummy was bloated but not hard, not too concerned but suggested a food allergy.  Thought the leg pains her due to growing, again not too concerned although her height is in the 5th % and weight in the 15th % for her age (yes, percetages have been falling).  She has had the leg pains since she was 2 and have always attributed her short stature to genetics (short me, grandma, and great grandparents).  Nothing was mentioned regarding her %'s.  The night before her preschool graduation we tried on the dress she wanted to wear and I could barely button it! This lead to a google search and of course the reason I'm here as it suggested celiac.

I took her in and had blood tests done.  I have not seen a copy of the results as the dr. office called back and said the tests came back negative.  However if I understand things right, they ran 4 tests… one for antibodies and three ig tests.  Her antibody test came back at 61 and all three of the other tests were way below negative.  She was 5yr 6month at time of tests.

Since then I have cut the obvious signs of gluten from her diet (I know she is still getting some hidden ones) and have noticed a great decrease in her bloating and her legs have only hurt a few times and even then it has been statements of "my legs hurt" and not the uncontrolleable sobbing it was before.

So my question of "what would you do?"… do I continue with a gluten free diet and work to cut hidden sources? do I also cut dairy as I know that also helps people heal? Do I push for more tests? 

Other family history: None of the women in my family have regular BM.  My husband think all 3 of our girls have extremely foul smelling BM. My mom has MS and there is type 2 diabetes on both sides of our families.  My husbands cousin in confirmed celiac. As mentioned before I am 5'3" (shortest in my family), his mom and mother's parents are all extremely short.  My husband has acid reflux (which caused ulcers on his esophagus and also found H.pylori - discovered my hiccups lasting days), gets extreme migraines, and has lost a signficant amount of weight about 3 yrs ago (not an unhealthy amount but he attributes it to stress).

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kareng Grand Master
kareng
Posted

I would go back to the doc and really question the trust results.  A 61 on a celiac antibody test is usually extremely positive.  You should get the test results and look for yourself.

squirmingitch Veteran
squirmingitch
Posted

Ditto what Karen said.

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted

I'm with the other posters. Bloating is a huge symptom for me. Most are going to say don't take anyone off gluten until diagnosis, but I can tell you I have spent decades being dismissed and slipping through cracks. So I am conflicted on the adult level, we got dismissed and classified as difficult patients long ago,  but in this day and age I am more hopeful for kids like yours with a mom like you.

What a loving, attentive, and advocate mother you are.  If this doctor will not reconsider what you are seeing/know about your child you may want to seek other types of doctors and get copies of those test results (you paid for them). In my opinion other Drs maybe more knowledgeable about celiac or food intolerance . It is disheartening to hear you are dismissed so easily about your concerns.

I can share a quick story I knew my daughter had an ear infection at four months of age. I called the pediatrician office , I was told babies that young don't get ear infections. I think I responded with humor me and accept I'm a nervous New mom. They actually booked an appointment probably to gauge my sanity. Regardless we both learned a lesson the nurse practitioner astonished met her first 4 month old with an ear infection, and I learned my motherly instincts were right. 

Give the Dr one more chance to learn (old dogs can learn new tricks) and if Dr is resistant to this professional introspection and seeking support from others Drs It is very possible her health will improve with your instinct and a New Dr too. Good luck.

 

Eggs Rookie
Eggs
Posted

Hi Karag,

I think it's awesome that you're being so proactive about your daughter's health.

I would definitely push for more info about why they think the blood test results don't merit more attention. Just an idea - with my kids' pediatrician, I don't come in with studies in hand and tell her I've done the research, but I kind of beat around the bush and say things like, "Oh, I read this. Is that something that I should worry about? I read this study and I'm not sure I understood it right? Actually, I printed it out. Here it is."  I'm a little ashamed to be suggesting these kind of tactics, but I've had too many doctors shut down when I try to dialogue with them about research, so I try to come at them the way in which I think they're most likely to respond. Unfortunately, in my experience, getting a doctor to pay attention to symptoms you think are important can be as much a matter of saying the right things as anything else. (I hope my experience isn't everyone's because that sounds awful, but I thought it was worth putting out there!)

I'm awaiting biopsy results for celiac disease, but the GI saw visible damage during my endoscopy. For what it's worth, I'm going to push for my youngest son (who is in the bottom percentiles and incredibly irritable all the time) to be screened before our household drops gluten entirely. From everything I've heard so far, if you have celiac disease, a diagnosis is really useful. If I was in your position, I would be worried that she wouldn't adhere to a strict gluten free diet as she got older without a diagnosis, which would be a problem if she actually has celiac disease. Anyway, that's my biggest concern about putting my son on a gluten free diet if he may have celiac disease.

Good luck!

 

 

Karag Apprentice
Karag
Posted
  • Author

Thank you all for your help/support! I requested a copy of her results and from what I see they were indeed negative (Ttg ab iga <.5u/ml, ttg igg <.8u/ml, aga ab iga <.2 u/ml, aga an igg <.7u/ml, iga 61mg/dL). As for the 61 it didn't say a result just that the range was 27-195, so I assume that means it was in the acceptable range and therefore negative. I am torn because I do believe a fully accurate diagnosis will help her down the road i don't want to put her through a scope to have it come out negative after blood results were negative. So I guess we will continue with a gluten free diet and continue to monitor her and discuss what we see with the Doctor. 

I am thinking that in another month I will reintroduce gluten into her diet. Am I correct that if she has NCGS she should react to the gluten in a few hours? But if she does have celiac (that the test somehow missed) it would take days or weeks for symptoms to reappear? And would those symptoms reappear with one encounter with gluten or would it take continued eating of gluten? Thanks again!

kareng Grand Master
kareng
Posted

Oh!  The 61 isn't an antibody test, it's just the total IGA.  That is run to see if a person makes the stuff that some of the tests, the IGA ones, look for.  So, yes, it all looks negative.

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  • 1 month later...
Karag Apprentice
Karag
Posted
  • Author

We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America.

I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks

Her blood panel results:

Ttg ab iga <.5u/ml

ttg igg <.8u/ml

aga ab iga <.2 u/ml

aga an igg <.7u/ml

iga 61mg/dL

 

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

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      Son's legs shaking

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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